“Mom I have a sore again!” The most dreaded words ever! Why? Why? Why? Was my first thought. Deep despair, digs into my heart. Really. “AGAIN!” I shout in my brain. I want to cry but I know I have to stop. Time to reorganize my brain and present the solid self, the one who assure the teenager that it will be ok.
How can she work and have these sores?
What will her future hold?
All those insecure thoughts continue to push their way toward the surface.
Will I be strong enough?
Will she make it through another summer of limited activity?
History-I have written about pressure sores in the past. Check out- https://transitionalmoment.wordpress.com/2013/03/01/pressure-sores-education-is-key-to-prevention/
They are the single most debilitating part of my child’s disability. The first in 2009. I calculate she has missed almost a year of her life due to pressure sore restrictions and hospitalizations. She has had sores on her legs, on her heel and on her rump. She has had 2 surgical repairs of her rump. Each time the sore has been caught earlier. Each time the sore has ended up causing Mel to miss huge chunks of her “normal life”
Today is June 16th and I hear those dreaded words. It’s father day, we are supposed to be headed to church. Life once again has thrown us a curve ball. Once again I feel that dreaded sinking feeling. Wait, should this not be about Mel. Sores; however, affect the entire family. It drags us all down.
I check the sore. It is about the size of a penny. Size does not really matter. It’s how deep. Is it tunneling? I can’t bear to assess. I am holding back the tears and wanting to scream. I quickly pull out the extra supplies and try to remember what the Doctors have done in the past. They would want us to call first thing Monday morning. That would be best; however Mel is seventeen. We will not have them next year. I have to figure this out. I can not image what adult care is going to be like.
The other reason for not calling. The reason Mel will mention as she requests I not call. Her current care team will want her 24/7 of her backside. Focus. Focus. What have I learned. First rule-keep it moist and clean. I put on a little silvasorb gel and then cover with optiform. Then I hide. I need time.
Day Two. I have it together. Mel is taking this in stride. She is hiding her stress and anger in her room. She does not want to venture out. Does not want to be on the couch in the family room. She is shutting out the world. Her way to deal. She of course does not want to call her care team. She knows their rules. Have I been wrong to push the envelope – to say. “I hear you” and then do it my way. To slightly adapt what the known is. I should not have taught my child to “do it my way’ when it comes to her Medical care. I am glad she questions but sometimes you need to do as you are told. My brain is allowing me to CAVE. I have decided to allow her to take part in her week of commitments at church. To help lead the week-long Vacation Bible School. Its only 4 hours. This decision may cost us a surgical repair. I know that Mel knows that. This is my way to pushing back at this stupid disorder. When one pushes thought a rebound effect may be in the future.
Day Two. The sore is 1.4 cm by 1.0 cm. It’s probably 1/4 cm deep and has started to tunnel under the skin (1/4 cm at the most). That tunnel is my fear. Did I measure right? Am I doing the right thing? Only time will tell. Today I decide to use fibracal. Fibracal has been used in the past to fill in the sore. I am doing this as this is the last thing the care team has done it the past. I am so hoping we are at the last stage. No infection, no intensive follow-up. I have always been the optimistic one.
It’s thursday. Day Five. The sore looks the same. That is good in my eyes. I know this is a 3-5 week processes, minimum. Three weeks, is my optimistic side. Five, I’m hoping is reality. Mel has been on her tummy or side for every day except for shower, restroom and the four hours of Vacation Bible School. I have decided to call the medical team. I need to make sure th band-aid I am applying is correct and the assessment I made is correct. I am hoping for no tunnel. I need to have her chair cushion mapped to assess pressure relief. I should not be gambling but I am. I can’t help it. Mel is so active I have to push the edge or so I tell myself.
I waited until thursday morning to tell Mel we were going to have the sore checked out. I wanted to get the wheelchair seat cushion pressured mapped. It was always difficult to get a good read with pressure mapping. Mel uses a High-Rise Roho Quatro. I disliked the mapping as she always left leaning way to one side. In the past, that has been the only way to get the correct read. No red spots. Red spots equal pressure areas. 3:00pm was the pressure mapping. Sure enough, a red spot showed its ugly self right where the pressure area is. Drats. The cushion was part of the problem. After 45 min the team decided on the best level of pressure. 3:45 time for the wound clinic. Mel and I know this routine all to well. I hold my breath. Yes, the wound looks better to me. I show the picture I took day one. The team decidesthe area looks better than in the first picture. I breathe. Mel is relieved. She is allowed to sit for up to four hours every day. The more we push the envelope the longer it will take to heal. And, most importantly, the higher chance infection or tunneling will occur. Its 5:15, the clinic is emptying out. All are headed home.
I remember the first time we made this trip over five years ago. We were not so lucky that time. In 2009, Mel did not leave. She spent over three months in the inpatient unit. I’m glad Mel now checks her skin. Catching pressure sores early on prevents all kinds of head aches. Mel is headed home, for this I am thankful. How many more pressure areas will she have to deal with. I hope this is the last but in my heart, I know this is know part of her life.
Day Eleven. June 27th Pressure sore check up. I have not looked in two days. We were told we could change the bandage every two days but two days is a long time, in my mind, to not catch, something. These sores develop in fifteen minutes. Mel has been on the couch for all but around four hours per day. She says she is doing push-ups to relieve pressure. Is she? She is still a teenager but I have seen a few lifts-ups. I know off-equals-healing but she has to have a life does she not…… The wound specialist comes in and takes a look. SUCCESS. The wound looks so much better. Mel is lucky. She caught this one early. As Mel’s sore is healing as expected, the nurse agrees with our 4-5 hours sitting per day schedule. She suggests Mel consider wearing a protective bandage at all times. This includes after this sore is healed. She believes the area is just to delicate to not have 24/7 protection. 24/7? In my mind I wonder if this is possible. I have never heard of this but we have to do something. Mel will have to learn how to apply her own protective bandage. One more thing to add. One more thing to get in the way of life.
Day Twelve Mel is off volunteering a local day care. I agree with five hours of sitting and then home. Tomorrow we have to get back to drivers education. It is not yet time to celebrate. I’m hoping for my original three-week prediction to come true.
Day Eighteen Its July 4th and Mel has been on a restricted sitting schedule for eighteen days. The wound care specialize indicated when the wound had no more seepage and no visible opening, we could gradually increase sitting time. By day fourteen, the bandage came off clean with no seepage. Mel has gradually increased her sitting time. Well, she is a teenager, so I have to admit the time off has varied with her desire to do things but she has gotten off when just sit-in around the home. I’m glad it summer but once again hate the fact that summer had to be interrupted with a sore. Today I am lifting all restrictions, today is a day to celebrate.
Pressure sore prevention measures now in place:
- At all times Mel will sit on a roho Quad mattress seat (chair, shower, toilet, car, couch).
- The roho toilet seat cushion has one major flaw. It’s made in two pieces and thus moves when she transfers. Mel now has to tie that down. I belive this is the original cause of this sore. She ties it down with an elastic band that she wraps under the toilet seat and over the roho. The elastic band is connected with a twisted paper clip. Yes the band is elastic but the band sits between the roho air cells and does not directly touch her skin.
- We are going to have to order an extra roho cushion. The current shower roho cushion is an old low profile. She sits 30-45 min in the shower and this possible one of the contributors to sore.
- Mel has jeans with large buttons on the back. The wound specialist indicated this is a potential sore waiting to happen. I will now check all pants for large, back pocket fasteners before purchasing.
- Continue skin checks. Thank goodness Mel is currently checking. She has a mirror on the underside of the toilet lid. Catching this one so early meant eighteen days of restriction versus sixty plus days of tummy or side time.
- A Mepilex Border bandage has to be used during intense activities. It should be used every day. Mel will need to place it over the post surgical site after every shower. It can stay on for two days.
- Chair push-ups, side-leaning and floor reaching have to be increased. This has never been a strong suite for Mel. She is in the teenage invincible stage. A teenage’s mentality is not prevention. Chair push-ups or side-stretches should have been a daily habit since day one of her scoliosis. This is one intervention area I feel her medical team fail at. At the first sight of any scoliosis, I feel they should have been shouting pressure sore prevention. I posted about Mel’s scoliosis some time ago. https://transitionalmoment.wordpress.com/2012/11/21/scoliosis/